Sitting Pretty: The View from My Ordinary Resilient Disabled Body

Before he retired, Taussig’s father had a strong work ethic. She compares this to her own lack of desire to go to high school, feeling overwhelmed by classes and physical pain as well as anxious and depressed at the thought of living in a world that does not take people with disabilities into account. She felt like a “giant, incompetent failure” and couldn’t imagine working a schedule like her father (106). During high school, Taussig applied for a counselor job at a summer camp but was turned down due to her disability. She and her friend Bertie worked in the kitchen instead. They soon learned that the camp hired them to make Taussig “feel included” and hired Bertie to help her. Taussig felt she was making a difference at the camp but realized her work was unimportant.

Later, Taussig realized she had to buy her own health insurance and health care at 23. Before her 23rd birthday, she lost all sensation from the waist down. She went to the hospital, but the doctors offered no explanation, and sensation slowly returned to her body. Taussig uses this story to highlight problems with health insurance and costs in the US:

[T]he single most universal trait we all share is having a body, and all of us, no matter what, are susceptible to the frailties of that body. All bodies age, weaken under the power of germs, viruses, diseases, pain, and injury, require intervention and maintenance, rebel and go rogue. All of our bodies are at risk (115).

To this day, Taussig worries this loss of sensation will happen again and that she won’t be able to afford treatment. This incident occurred before Sam proposed, and she decided to marry him partially because he had health insurance, thus providing a sense of security. At the time, she was unaware this was one of the reasons she married him, but now she sees how her disability impacted her decision. Taussig reminds herself that she was young and without help at the time of her decision, a result of being excluded from a world made for able bodies. This experience differs from other marginalized groups: “When you’re born into a marginalized community whose members share your identity, you are born into a family that understands and knows. […] They carry the insider knowledge, and they can help prepare you” (118). To Taussig, people with disabilities don’t usually have a unified community.

After Taussig and Sam divorced, a friend with a disability told a surprised Taussig about Social Security and Medicaid benefits for people with disabilities. To qualify for these programs, people with disabilities have to be poor or find a job with accommodations and health benefits—so few people with disabilities work full-time. Taussig received subsidized housing and food stamps and began to teach while going to college, but then she started making too much money for benefits. She struggled to talk to the Social Security Administration about balancing work without losing benefits. When she finished graduate school, she looked for a job but realized she had to accommodate her body first, rather than her passion. Taussig took a job teaching high school English, which made her “feel valuable, worthwhile, respectable” (126). She argues this decision was influenced by ableism, which only values people who work and earn a lot.

Taussig didn’t want to draw attention to her disability while teaching but naturally dealt with physical pain and felt guilty about taking sick days. This secrecy reflects the impact of her father and societal ideas about work. This also showed her that the world was not made for people with disabilities. Taussig’s employer offered accommodations, but she herself didn’t find them “empowering,” as the world tends to value overworking. To her, other people might want accommodations, not just people with disabilities, because they might have needs like physical pain, mental health conditions, cognitive differences, different food schedules, and fatigue. She argues that bodies with disabilities illustrate human adaptability to impairment. Because the world could use more adaptability for the sake of sustainability, people with disabilities can offer a unique perspective.

Taussig ends the section by considering what her father missed out on because of his overworking. She asked him whether or not he worried about this issue, and to her surprise, he said he did. When he retired, he became freer, and she considers whether or not he might have felt this way if his work life had been more flexible. 

Taussig hated attending birthday parties as a child. She felt like an outsider because she was unable to go swimming and took a long time in the bathroom: “I didn’t belong. This, I believed, was a fact…It never occurred to me that there could or should be a different way” (138). She still often feels like she does not belong.

As an adult, Taussig and Micah attended a party at a loft, where she overheard women talking about being catcalled. She felt excluded because she never experienced this, except when a man said she was “the hottest girl in a wheelchair [he’d] ever seen” (146). She considers whether or not she belongs to “women” as a group because she lacks shared struggles such as objectification. Taussig remembers how her parents worried about her sister wearing revealing clothes but not her. She remembers when a man inappropriately told her sister that she should model and she felt jealous. She also recalls girls mentioning boys wanting to kiss them and being told to smile by men, experiences she herself never had. Furthermore, Taussig feels excluded by mothers and hopeful mothers and wonders if it’s because she doesn’t want children or because she conditioned herself to feel this way because of lack of representation of pregnant people with disabilities.

Taussig does not focus on concerns like objectification because she worries about accessibility, which leaves her feeling outside of the world of women:

I can feel myself straining to fit into a constructed notion of what it actually means to be a woman—the verified version. Womanhood means enduring harassment, men staring at your boobs in doctors’ offices and bars, getting hit on by your male boss or the group of guys ordering drinks at your table, working twice as hard to get that promotion…getting married and/or having babies, or making the decision not to (150).

Taussig feels men instead fixate on her wheelchair, and her main concern is needing accommodations. She wonders which of her identities comes first: “Does my disability swallow my womanhood? When people look at me, is my disability so loud and alienating that my womanhood is unrecognizable? And, a much more pressing question, Why does it matter?” (150). She attended the Women’s March in 2017 and made a sign that said “Women’s Rights, Disability Rights, HUMAN RIGHTS” and felt ashamed because she was the only one there who mentioned disability. Taussig realized this shame comes from internalized ableism. She told two friends about her difficulty writing about disability, womanhood, and feminism, and they considered how feminism needs to be more inclusive. She once felt feminism encompassed too many identities to include disability but realized she was reverting to internalized ableism. Taussig’s friends pointed out she could bring her perspective to feminist conversation on others’ behalf.

Taussig discusses an essay by Christopher Bell, “Introducing White Disability Studies: A Modest Proposal,” which addresses the focus on white people in disability studies. She argues that everyone should be included in both disability studies and feminism. She then describes a panel discussion on women’s issues, where her experience was not represented: When the panel discussed work-life balance, they ignored bodily limitations. Taussig suggests that excluding women with disabilities from “what it means to be a woman limits all of us” because all women have “a body that strains under the forces of gravity and time, that wrinkles and breaks, swells and sags, accumulates pain and injury” (158). Historically, women’s bodily issues, like periods, were used to prove their inability to work or receive an education. Women thus needed to prove their independence, which Taussig says supports the patriarchal idea of the perfect body.

Taussig reflects on the relationship between independence and needing help. When she leans on her husband Micah, she views this dependence as “sturdy” rather than constraining or weak. To her, interdependence is perhaps more important than independence, and she considers how women with disabilities can illuminate this. As to be expected of intersectionality, issues such as violence against women, reproductive rights, and equal pay impact women with disabilities more than women without disabilities: Women with disabilities face more violence, forced sterilizations, and abortions and earn less than women without disabilities. Overall, Taussig argues feminism is shifting its focus from gender to power: “[It] asks who has power and who doesn’t, where does that power come from, how do we disrupt the great disparity between the powerful and powerless, and what are alternate ways to access power while caring for each other?” (165).